Archive for November, 2009

So I have been thinking about this post since Thanksgiving, but on my new drug regimen I fall asleep even earlier than I did on Radiation alone. Means less time to get the same amount of stuff done. Makes “getting it all done” difficult, therefore it all gets done later. Waaaaay later. It would have stressed the “old me” out, but the “new me” just kind of sighs……..and moves on.

So, here is my late, Thanksgiving “grateful list”, not in any particular order.

Of course, I am so grateful for my husband for keeping everything together while I have fallen apart this year. I don’t know how I would have made it through without him. And I appreciate and adore my boys, even though at times it is challenging to hold onto that thought, they do add depth and love to my life. And as a family, we were all so grateful for my sister Karen for being “mom” to all of us for those three weeks after surgery. We really needed all the caring and love you freely gave us.

I love my medical team. Dr. Barone, my goodness, what a great listener and patient man. I am amazed that you permit me so many questions without once looking at your watch. I am grateful for your caring concern, and also for your incredible staff. From the nurses in your office to the office staff that greets me when I walk in, I feel like the most important person there.

Dr. Butler….you are so intense. I’m glad of it, too. Although back in March and April and May I was a little intimidated by you, in my new life since, I understand your recommendations so much better. Thanks for being so….forceful. I appreciate your experience now.

Dr. Schott and all the people at U of M, especially NP Joan. I felt so totally lucky to have been there this past summer. All of the people at U of M were so good! The nurses are so incredible, and made each scary chemotherapy infusion an entirely bearable experience.

The radiation decision was particularly difficult. Back in Ohio for the fall of 2009, I very carefully chose Dr. Rubin, and what a smart, quirky, perceptive guy. So lucky to have found him…and everyone at Hickman Cancer Center…from the front medical receptionists to the nurses (xoxo’s for Pat) and of course my fabulous “radiators”, Natalie and Donna. Seeing you everyday, I came to think of you as my new BFF’s, and it made the whole experience easier. Thank you for making me feel important everyday.

Of course, I am deeply in debt to Cindy Parke, CNM, it was your thorough examination back in February that discovered cancer. I can’t even think of the words to describe my gratitude for your experience and recommendations.

The Victory Center is wonderful. Boy do I love you all! You have no idea how your services, your friendliness and smiling faces have helped me. I credit the healing touch, and reiki and sound therapy for my speedy recovery.

My friends have also been so incredibly supportive. There are too many of you to name and I’m afraid I’d leave someone out. I love those of you who sent cards and e-mail…my goodness, you’ll never know how each one lifted my spirits. I still have them all. Some of you went way out of your way to make food and bring it over for me and my family. You know how much good food means to me…especially when I wasn’t able to do it myself….thank-you, thank-you! And those of you who offered to take the boys for an afternoon, or watch them while I went on any of a hundred Dr appointments…you are golden! I can honestly say I never worried about my boys while in your care! Those offers of assistance meant so much to me and to Lou, too! And all of the special gifts, the hats and the shawls, and the CD’s and the flowers and the scarves and the jewelry and the angels and the chocolates and….I could go on and on. Each gift really meant something special to me. Thank-you!

My surrogate family, the Unitarians. Boy do I appreciate you all. You always ask how I am doing, and have helped with food and rides and child care and housecleaning and cards and visits and hugs and love. You are the best group of big sisters and brothers and mothers and fathers I could have ever asked for. I am grateful to know you all.

My Penta Family and my Anthony Wayne Family-wow. Most people would think having two bosses would be double stress, but I have been incredibly lucky here. I work for the best group of Superintendents and Principals and Supervisors ever! Kind and thoughtful and helpful and generous with the praise. What about nurse Juli…..how could I be so lucky? Thank you for being there when I was so new to this cancer business, and being a calm voice, and an experienced sounding board. And my teacher friends are the greatest, too. Thank you for the many, many supportive things you have done for me in the last year. Of course, my students have just been golden. I value their bright enthusiastic attitudes so much. Being with these incredible kids makes getting back to work such a priviledge. In addition, I have met some wonderful, thoughtful parents of students. Your many kind words have really humbled me.

Well, once again I am nodding out at the keyboard, and I really haven’t finished all I wanted to say, much less polish up the writing. But for tonight this is gettin’ published, and I just hope it’s good enough. So many of you have been so good to me.

OK-I haven’t passed these kinds of things along here, but this just made my morning, and I thought I’d share the following email I woke up to today. And since the U.S. Preventive Task Force (yes, I am still angry about this..) recently has supported recommendations against mammograms for women in their 30’s and 40’s I’m supporting anything that will put dollars into free mammograms for women. Click on the YouTube link at the bottom:

This is really good! Enjoy!!
Our daughter-in-law, Emily (MacInnes) Somers, created, directed and choreographed this in Portland last week for her Medline glove division as a fundraiser for breast cancer awareness. This was all her idea to help promote their new pink gloves. I don’t know how she got so many employees, doctors and patients to participate, but it started to really catch on and they all had a lot of fun doing it.

When the video gets 1 million hits, Medline will be making a huge contribution to the hospital, as well as offering free mammograms for the community. Please check it out. It’s an easy and great way to donate to a wonderful cause, and who hasn’t been touched by breast cancer?

Your estradiol (estrogen) level was less than 10. You can start the arimidex and get your labs repeated in two weeks as we planned.

Joan

And with that simple sweet message from my Nurse Practitioner, I was officially informed that I am probably in menopause (compliments of chemotherapy) and therefore in line to receive the slightly more effective hormone blocking drug, arimidex. This is the most effective intervention in my entire cancer fightin’ battle plan (other than that mastectomy thing) and here we are eight and a half months after diagnosis, finally getting around to it. Seems kind of backwards, to save the best stuff for last, but for a bunch of complex reasons I don’t have the energy to discuss, it’s just the accepted protocol (for my kind of cancer)….. Surgery first, next chemo, than radiation, then hormone blocking/inhibiting medications. Finally.

Finally. Are we there yet? Depends on which there. I am “there” if there means the end of the really invasive, get-in-your-car-and-go-to-it kinds of therapies. The “you-know-this-is-gonna-be-not-fun” kind of treatments. Yea, for at least the next 7 months, no more painful procedures (I think). Just drugs every day, and “cross your fingers and hope not to die” that the bad side effects won’t come to roost in my poor little body.

Poor pharmacist, I was kind of a pill (HA! A little drug humor!) on Saturday when I went to pick up the prescription. As she listed off the potential side effects I should be aware of, I blurted back a guffaw and a smartass response.

Pharmacist: You need to be aware of any chest pain. me: HA! I already got it! Burned on one side, stretched tight on the other side! Been uncomfortable for so long it almost feels like normal!

Pharmacist: Potential for reflux me: urp!….already got that too. That came with the radiation.

and so on and so forth. Every potential side effect, I already know on some level. I eventually stopped being a jerk and took my drugs and went home.

And there it was on a Saturday afternoon, all by myself,with no nurse, technician, beeping piece of equipment or Monster of a Machine, I took my first arimidex. Nobody in the house gave a hoot for the irony of the situation…… Probably for the best, I guess. After all this time, tons of appointments, lots of interventions, the most important drug is gulped down without even a weakly sung fanfare!

So three days of arimidex down and 1,822 to go. Fatigue is making me nod off at the keyboard. I’ll have to tell you about todays’ Zometa#2 another time.

such as the hair in our eyebrows. This was the hair area that was the last to leave, and is now, 11 weeks after the last chemo, finally coming back in with gusto! These past few months I tried to ignore the fact that I missed the little buggars….just penciled ’em in, and tried not to look at a mirror all day. But now…..now I spend more time than I’d like to admit inches away from the mirror marveling at just how many hairs go into making an eyebrow. Did you know that the average human eyebrow has about 500 hairs? And I’m pretty sure I lost about 450 of them per brow, but the follicles are no longer inhibited by the chemo meds, cells are reproducing like crazy now, and I am absolutely delighted about this! I never realized how much I LOVE my eyebrows!

And the hair on your head….well, let me just tell you, head hair is more than just for “pretty”. It’s dang cold without any hair in November in Ohio! Sometimes I get kind of tired wearing the hats, but there is no option….especially in an old house like ours, it is too expensive to heat toasty-warm all the time, so I walk around with hoodies and hats now that Fall has taken firm hold of Northwest Ohio and is not letting go.

But, my hair IS coming back in! This image was taken a little more than two months after my last chemotherapy infusion.

November 2009

And for those of you that know me….what do you think of the new hairdo? Quite a departure from the original, isn’t it? I assume that it will get curly as it gets longer, whatddya think? And who knew I had so much silver hair? So now the question is….do I keep it au naturel? I have become accustomed to the simplicity of not having hair. And actually, I have found it suits me, the 5 second “style” is really convenient.

Unfortunately, without a massive mess of curly hair to distract the eye….all the lines and crows feet are way more apparent now. Yea, that’s kind of a problem. But, one I guess I’ll just have to ignore. Whether I like it or not I think I earned all those age lines, given what I’ve been through this year. And really, I am grateful to be alive. And I’m grateful to be feeling better, even though it is usually only for a half day at a time. Cancer really changes your perspective on everything.

OK, I’m going to stop bitching about Susan Love for just a second here to tell you about just how darn exciting it was last night to put on my fancy prosthetic-holding bra, with my real (fake) “weighted” boob tucked neatly in her pocket. It is the first time in about a month that I have been able to put on a “real” bra due to the pain and burned skin from radiation.

Cool-Paula and Bill had the premier opening of their new gallery, River House Arts with:

and I was lucky enough to go, and lucky enough to get all dressed up with two real looking boobs. The boobs under my shirt, I mean. It was great fun, and I felt good, and the remaining discomfort from radiation was mitigated by medication, so I was able to ignore it for a night.

So the mess created by the U.S. Preventive Task Force, you know, the ones that this past Monday recommended:

that most women should not start routine screening until they are 50, (the current standard is 40).

women 50 to 74 years old be screened every two years (currently the recommendation is every year)

discouraged doctors from teaching breast self-examination.

You might wonder why in God’s name would any group make these recommendations? well, their reasoning is that studies show that “the additional benefit gained by starting screening at age 40 years rather than at age 50 years is small, and that moderate harms from screening remain at any age.” Tell that to women who have been diagnosed at age 40 (and younger) and are alive today because a routine screening mammogram found a suspicious shadow.

Yesterday, Kathleen Sebelius, (secretary of health and human services) said that the statement released by the U.S. Preventive Services Task Force, had “caused a great deal of confusion and worry” and they are “an outside independent panel of doctors and scientists who make recommendations” and who neither “set federal policy” nor “determine what services are covered by the federal government.” Thank you Secretary Sebelius!

“The task force has presented some new evidence for consideration,” she added, “but our policies remain unchanged. Indeed, I would be very surprised if any private insurance company changed its mammography coverage decisions as a result of this action.”

Let’s hope she is right. On Tuesday, I spent time with NP Joan and my medical oncologist, Dr. Schott who both acknowledged the information this recommendation is based upon has been out there for years, but the benefits of routine screening mammograms clearly outweigh the downsides. Schott believes this is a purely political statement released at a sensitive time in our country, just when it appears there may be some consensus on the new Health Care guidelines.

So I asked her what she thought of the arguments that beginning mammograms at 40 would expose women to excess radiation. Her response? “You get more radiation in a cross-country flight than you do in one mammogram” OK…so what are the other objections of the conservative researchers who want to eliminate our yearly treks to get our boobs smashed in the big machine…

Some researchers say mammograms at 40 should be eliminated because it causes “unnecessary anxiety”. My perspective is that it may cause anxiety, but from where I sit now, still alive and actively working on being cancer free, it is a completely necessary anxiety. I am incensed that any group would suggest that I not be completely proactive with my health carebecause it might cause “unnecessary anxiety”!! What are we? A bunch of little girls? WOMEN, adult women, are a resilient bunch. If we can handle working AND mothering, we can handle husbands AND children, and we still do MOST of the house work while we ALSO work outside the home, I think we can handle a little yearly anxiety when we get the mammograms. The idiots who suggested these guidelines clearly don’t know the women that I know.

And the recommendation that medical professionals drop the teaching of Breast Self Exams? Oh my god, what should we do with that? Whenever we discourage education in this country we just look like idiots! (Think Kansas and science education recommendations in the 90’s ). Why in Gods name would you discourage women from getting to know their breasts better?! My guess is, most women kind of half heartedly do the BSE, or forget about doing them until they hear a breast cancer story of someone they know. Lots of women just don’t like to do it. This recommendation is dangerous because it gives women mental permission to say, “oh, well, it doesn’t do any good anyways”. And women who might have been guilted or scared into doing their BSE’s will drop them completely. If that happens, I guarantee you, cancers will be found later rather than earlier, and women will die.

I guess that is what has pissed me off so much about this. It is a numbers thing vs. a human thing. If anyone seriously embraces these guidelines, even more young women will die from breast cancer. This doesn’t have to happen. We have the tools to discover cancer before it is big enough to metastasize to other organs. It is early screening mammograms, and breast self exams. You know that, I know that , the American Cancer Society knows that, and I can go on and on…….

I have so many more words inside of me on this topic, but I HAVE to go to work now. As an educator. I promise I’ll never go backwards in my education endeavors as the U.S. Preventive Task Force has. Shame on them.

I have so many words/thoughts/images to share, alas, the obligations of full time work, family, children, and sheer exhaustion are keeping my fingertips off the keyboard. Look back here this weekend for the latest on the third round of cancer killin’ , what happens to big sections of skin when it’s been radiated, why I think Susan Love is a stupid idiot, and another hair image (old friends….you’ll be shocked!)